Cole started weekly therapy in the NICU at Fairfax Hospital. It was mostly stretching and positioning, but it was therapy.
After discharge he started physical therapy with Jill (Reagan's therapist) on February 8th, 2011 and has been in therapy ever since. That's 7 years of weekly therapy and for a while he was doing both physical and occupational therapy so he went twice weekly. He didn't walk until he was almost 2 years old. His journey has been very long and he has worked very hard. Anyone who has gone to physical or occupational therapy know that everything they ask you to do is hard...or it wouldn't be a goal. He's had many therapists over the years and unfortunately we had to move from Children's Therapy Center to INOVA Loudoun Hospital when our insurance changed. We definitely miss our therapists. They truly have made such a big difference in both our children's lives and we owe them a debt of gratitude.
Although we are now free from private therapy, both kids are still receiving occupational therapy services through the school. Their goals in school are very different because they must focus only on skills that impact their education. For example, being able to open glue containers or effectively use scissors, or write legibly within the lines. In private therapy we are able to work on those skills in addition to goals related to skills like dressing (e.g., buttons are hard for both kids) or other life skills.
You would think I should be ecstatic we have one less appointment and that Cole's therapist, Christine, thinks he is ready to take some time off. But it comes with mixed emotions. Although I'm happy he has achieved his goals, there are still areas in which he needs extra work. I am happy that she thinks he can achieve gains through his other activities, but it also increases the pressure of making sure we work on those things at home or through activities. We have cut back on a lot of activities for a few months to try to settle down our hectic schedule and see if that helps the signs of sensory processing challenges. Christine is going to build a home program for us to follow and we will focus on those to help him continue to see gains. When you see how tiny he was when he started, and how happy he is today, I couldn't ask for more. He couldn't even sit up on his first visit!
I've struggled for the last few weeks as life has started to feel "normal" again. The doctor appointments continue to become fewer and further between. Now with therapy being discontinued, it's closer to normal than we've felt in over 8 years. But each time I've allowed myself to feel "normal" we've been kicked in the gut...either more seizures, or a concern about a shunt failure or finding out Cole needs to learn braille. So my nature is to have my guard up. But normal feels really good. I still worry about what kind of job Reagan will have that doesn't require typing. I worry when Cole grows up where he will live so he can catch a bus to get to work. And as he is doing more reading now in first grade I am realizing that he will definitely need an alternative solution for learning - either braille or text to speech translation. But we will carry on and find our way one day at a time.
So when I say "normal" I guess I mean nothing is emergent anymore...it has become a lifestyle and is therefor normalizing. We have a child with partial paralysis of the left side. We have a son who is legally blind. We have a daughter in Heaven, and yet I find myself feeling guilty that they are doing so well. I lost my 7 year old God son one month ago to an unexpected aneurism. It has been devastating to lose him and heartbreaking to see how much pain it has caused his family and friends and how much our lives will forever be changed. My father always says that God creates your spirit but a husband and wife create the body. God does not create pain and doesn't cause or choose medical issues.
We had an interesting discussion this week about God's will. When we face tragedy we pray and ask God for help. I remember praying, "God, please let Reagan live through brain surgery." "God, please keep Kendall and Cole safe in my belly so they are healthy when they are born." When our prayers are answered people always say, "Praise the Lord" as if he chose to cure the cancer or prevent death. We search for answers for why God allows good people to feel such pain and face tragedy. But truthfully we need to pray NOT for the outcome, but for the understanding. So maybe instead of praying for good health, we should pray for the strength to face the illness if we get sick.
We pray and ask God not to take our child and then ask God why he let our child die. We get confused and angry when our prayers aren't answered. We get angry because we don't understand why He would allow this to happen to good people. But maybe He is not in control of all the things we ask him to help us with in our prays...and therefore we are praying for the wrong thing. God doesn't DO these things to us like give us a tumor, just like he doesn't create the hurricane that kills people and levels a town. These things that happen are biological or nature at work. We must pray not for an OUTCOME but rather for the ABILITY to handle the outcome. It's interesting because if we accept this to be true, then the anger and frustration that something so horrible could have happened is not blamed on God, but rather He becomes a savior to help us move past the pain by
asking Him for strength.
As I continue to pray for strength and understanding, I want to share a photo I found this week. It truly speaks to me. I have often considered ending my blog now that life is no longer emergent, but I still want to believe that my journey as a purpose...and I don't know who I can help by sharing that journey. This photo is part of a project to help others understand the feeling of losing a child. It is such a truly empty feeling. A feeling I had almost 7 years ago and one that I feel again with the loss of my God son. But today I have a new understanding. I don't ask God why. I ask God to give me the strength to move forward, feel happiness again, and support my friend and her family as they learn to live with a silence in their home that is truly life altering. If you believe, please lift them in prayer as their journey to healing will be a long one. (You can click on the photo to view it larger.)
Empty Photo Project by Susana Butterworth